In 2015, Christine Ashimwe got her first episode of thrombosis after she gave birth to her last born. Today, she is the founder of Rwanda Clot Awareness Network (RCAN), an organisation that brings together patients, advocates, researchers and healthcare professionals in Rwanda and is dedicated to increasing public awareness and education about thrombosis. An environmentalist by training, She also holds a post graduate diploma in gender and development and is currently pursuing a master’s degree in Global health delivery from the University of Global Health Equity. Ashimwe recently received the inaugural prestigious award for thrombosis advocacy achievements by the International Society on Thrombosis and Haemotasis (ISTH). Sunday Magazine’s Sharon Kantengwa sat down with the 35-year-old mother of three and had a chat about the achievements and challenges of the network and what the award means to her. About RCAN The network has over 60 patients who are on treatment for blood clots and had both deep vein thrombosis and pulmonary embolism (deep vein thrombosis). The network also has slightly over 15 medical doctors who work with us to be able to speak to their patients and be able to connect them to their network because most of the time these patients think that they are alone. We also have full time partners like Team Heart, Vine pharmacy, Prime Insurance, Lancet Laboratories. The media and local government are partners as well. How did the network come into existence? The network was started on March 9, 2016 which was a few months after I had my first thrombosis. The first day after I got the incident, I realised that not so many people knew about it as I had never heard anyone talk about it, and about two weeks after my incident, I learned that other women had died due to the same condition, leaving their babies behind. So I kept wondering if it’s because it’s not so common that no one is doing something about it. It is then that I realised that I had to do something in my capacity. I called my friends and asked them to invite their friends and we gathered in my compound. I also invited doctors who were treating me and they explained to the 60 people who were in attendance about the condition. It is then that I realised that people were eager to learn and I decided that there was no turning back and that I would continue saving lives, one at a time. One in four people worldwide, die of this condition and it doesn’t necessitate us to have a lot to bring about change in our society. What can you say of your achievements and challenges so far? My first achievement is for the very few lives that have been saved by the existence of this network. Four people’s lives so far have been saved by this network. The other achievement is the fact that RCAN had the privilege of winning an award for thrombosis advocacy achievements by the International Society on Thrombosis and Haemotasis (ISTH). The award comes with a stipend of $ 5,000 that we can use to do any awareness project. In terms of thrombosis awareness, we have put Rwanda on the map because in July next year, I will attend the International Congress on Thrombosis and Hemostasis in Melbourne, Australia and I will be among the panelists. The other achievement is that we were recently joined by the Ministry of Health and RBC and we organised an awareness event on the World Thrombosis Day. I can see some light at the end of the tunnel. There are also challenges and the first one is medical practitioners are not capable of diagnosing the condition as soon as they receive a patient because this is a condition that looks like other diseases, and there is a possibility of confusing it with other infections, misdiagnosing it and the person dies in the process of confusion. The other challenge is reaching many people with the little capacity that we have. We decided to start small, reach the few people that we could and expand. What does winning the award mean to RCAN? I got over 380 nominations and they were not only from Rwanda. What this means is that we shouldn’t sit back and relax. There is still a long way to go because when I see how many people and organisations are attached; it also comes with a lot of challenges. We as a country have to do research and make sure that we have some tangible results whereby we are able to tell the prevalence. Today, we are focusing on thrombosis but the network is going to start having ramifications where we will be having other diseases that are less known such as fibromyalgia. We have to have, in this network, a branch looking at antenatal education for pregnant women to know thrombosis and look at preventive measures of preeclampsia that causes it. We also have to look at the heart because thrombosis cause heart problems. Thrombosis can also cause depression in some people and so we will be having a branch having counselling. What are your other plans for RCAN? In the short term, we are planning to reach as many people as possible, not only in urban places but also in rural Rwanda, and be able to train health care professionals to be able to see someone who has this condition and put them on treatment. We also want to put registers in different hospitals to be able to tap the people who are diagnosed with this condition, as this will help us to be able to conduct research and have the right numbers.
